I don't feel 41 and don't feek like I have Lupus ;)

My 18 year old and I decided this morning that our family is so zany that if we didn’t laugh we’d have to cry! You know it’s going to be a “one of those days” when you wake up to mass chaos. Raised voices yelling at 3 barking dogs to behave, my Mother telling my stepfather (who was left brain injured after a heart attack 10 months ago - also home this weekend from his rehab home) “put that pill in your mouth and DON’T try to give it to the dog”!, and my youngest standing over the guest bed saying “Happy 41st Birthday Mommy”. Blink. Blink. Awake now I am thinking thank you Lord for another glorious day and then oh gosh; please don’t give any narcotics to my dog Jack. He is already crazy enough and crap – I’m 41 today?? Oh man, I don’t feel 41.  I fly out of bed and run to the Dining Room for dog/pill investigation.

So let me back track… It’s my birthday weekend and we decided (as we often do on my husband’s ARMY Guard Weekends) to camp out at my Mom’s house in Western Carolina. It’s a closer drive to Charlotte for him and I am well enough to travel short distances overnight again (Yay). My oldest daughter came home from ECU too so we have a house full.  We have Moms two poodles and my Jack Russell Mix. Jack gets in trouble a lot by Grandma for sneaking up on her girl poodle on the side she is blind and he slaps her on the back with his paw. So then Mom gives me the ‘evil eye’. What can I say? He’s a true Alpha Male.

We watched the Penn State vs. ‘Bama game last night and my Stepfather kept yelling at the TV every time “Cornell” scored? I just let him believe ‘Bama was Cornell because it made him happy but tried to remind him he always liked the Blue Team more. We are all originally from NY and my sister works at Cornell so I guess that is where he got the idea? As I’m watching the game my Mom is giving him his pills and apparently I was too involved in the game and she turned her back so neither of us realized he either threw the pills across the room or spit them. My mom later stepped on one and figured it out. When he was on his way to bed we all said goodnight to him and Mom said to him “say goodnight to Julie” and he looked at her perplexed and said “Is Julie here?”… Ugh. At other times he will blow you away with being so correct with someone's name or an event in the past.  Neurology is so interesting and frustrating at the same time.

My Mom is a Saint.  She has been through a lot with her husbands heart attack and brain injury (at only age 50) 11/20/09, her Brother's cancer, and my Lupus.  My Step-grandparent's flew in from Ithaca, NY in December to try to help her out but while here in NC my Step-grandfather had a stroke in the back seat of my Mom's car.  It was on the way to see his son and we think the condition of my Stepfather was just too much for his Father to comprehend or handle... Since they were in a different county the Ambulance transported my Step-grandfather to a hospital 45 minutes from my Stepfather's Nursing/Rehab home.  It all worked out and he was able to fly home eventually but for a while, it was crazy for my mom. My Stepfather's Mother moved up to NC from Tampa, Florida with her family to help out thank God. 

Wow, I have actually (knock on wood) been getting steadily better. I haven’t felt too many affects from Lupus for the last couple of weeks other than fatigue and apparent blood pressure issues. My husband and friends are noticing signs of me needing to rest before I do so they help with slowing me down. I asked them how they know I need to rest and they all say I just change quickly. My expression changes and I start slowing down. Thankful for their interventions I am able to get more accomplished in the long run.

Apparently, word on the street is that I look a LOT healthier because I gained all of my weight that I had originally lost back (right around 20 lbs). The weight shifted to unexpected areas *grin/frown* *Husband does happy dance*.

Thanks for reading,

Julie

Happy Labor Day Weekend

"Mommy, will you always be sick?” “No, Mommy is broken right now but the Dr.’s are going to get me all fixed up”. I didn’t exactly lie; I am hoping this goes into remission so that I am fixed.

Moving my oldest daughter into her Dorm at East Carolina and then having my husband temporarily deploy to El Salvador 2 days later flung me into another flare  At the college I was in and out of the sun and didn’t listen to my family when they kept telling me to “rest Jul”, “stay in the shade Jul”, “Mom lay on the bed, I don’t want you to get sick again”… “I’ll be fine” I said. I was feeling pretty good and started to feel better as the days went on. I was back into designing jewelry and delving into the photography that I love so much. I went back to the gym, pushed myself on the Elliptical and didn’t slow down. Then 5 days later it hit...

I seemed okay until ½ way through my daughter’s first day of 2nd grade. Then the familiar crushing fatigue, sore throat, loss of appetite, and chills alternating with sweats started. I went from feeling just fine to REAL sick very quickly. I don’t know how I found the energy but I met my youngest daughter at the front door to act all excited about the first day. By the look on her little face she knew I was ill again. No matter how hard I try to hide it, I can’t fool her. I hate that terrified look  Darn Army… why El Salvador and why NOW? No one is here to help us and I desperately needed a strong shoulder to cry on. My daughter needs to feel secure and she can’t when I am home alone and ill. Talk about insecurity and panic mode…

I just gave in this time, I know now that when my body says rest I do it. If that means for 11 hours or 11 days it doesn’t matter. Boxing gloves off, my friend Tamura took over with my youngest and I called my mom in for the weekend to help until my husband got home. When my husband arrived, he told me under no circumstances was I to do anything but shower and rest – period, until I pulled out of this flare. He is so supportive and calm. In true military mode, he just takes over – adapt and overcome.

During the last week (spent mostly resting) I reluctantly canceled my upcoming paid for Bahamas Cruise. My Dr. and husband did not want me to be out of the continental US during this unstable stage and have to be medevaced to Florida should anything happen on the ship. Although I agreed with them, I cried so hard I had the booking agent crying for Pete’s sake (sorry Lorraine and Susan). I was supposed to be my 41st Birthday bash and my friends Jason and Jen are booked on the same cruise. Darn Lupus *cry*.

When God? WHEN will this get better? I am not missing college football games and Hockey games even if I have to lie on the floor of the arenas to attend. I know it takes 6 months for the Plaquenil to really do its job so I am patiently waiting and praying. Until then, life must go on and the only way I know how to live is to the fullest.

Realizing as transplants here in NC, we need reinforcement in time of need. We interviewed a Nanny. My only requirement, other than she actually like kids (hey, you never know) is that she speak English as a second language so that she can teach our youngest Spanish. A sweet lady that speaks very broken English, but background checked and valid Driver’s License. Veronica will be helpful for me.

Today was great. I felt like the old me. I felt no signs at all of the dreaded “L”. I helped put up a tent for my husband and daughter – he promised her a camp out so it’s in the backyard ;) We put up a tree swing on our property for our youngest and had a very enjoyable day spent outside, finished off with a BBQ. Company in from Corning, NY (my home town ). I hope I don’t have to pay tomorrow for having a good day today.

Thanks for following,
Julie